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APS - Increased Risk of Blood Clots
Has anyone with an MPN with JAK-2 had an Extended Antiphospholipid Profile done? These blood tests check your antibodies (immunoglobulin) which are protective proteins (made by your plasma cells - WBC) produced by your immune system. They attach to foreign substances (antigens) such as bacteria, fungi
Has anyone with an MPN with JAK-2 had an Extended Antiphospholipid Profile done? These blood tests check your antibodies (immunoglobulin) which are protective proteins (made by your plasma cells - WBC) produced by your immune system. They attach to foreign substances (antigens) such as bacteria, fungi
Buggerbear
in
MPN Voice
1 year ago
Important to know, but sucks to have: TP53 Mutations Confer High Risk in Patients With Myelofibrosis Undergoing HSCT
Patients with myelofibrosis who harbored multi-hit TP53 mutations were at increased risk for relapse, shorter survival, and leukemic transformation after hematopoietic stem cell transplant (HSCT), according to results of a study published in the Blood. “TP53 mutations have been associated with poor
Patients with myelofibrosis who harbored multi-hit TP53 mutations were at increased risk for relapse, shorter survival, and leukemic transformation after hematopoietic stem cell transplant (HSCT), according to results of a study published in the Blood. “TP53 mutations have been associated with poor
PhysAssist
in
MPN Voice
1 year ago
BTK Inhibitor Therapy for CLL: An International Perspective - Stephan Stilgenbauer, MD
BTK Inhibitor Therapy for CLL: An International Perspective Stephan Stilgenbauer, MD Expert Commentary ClinicalThought™ - Targeted therapies, including BTK inhibitors and combinations incorporating BCL-2 inhibitors, have replaced chemoimmunotherapy as the standard of care for treating CLL.
BTK Inhibitor Therapy for CLL: An International Perspective Stephan Stilgenbauer, MD Expert Commentary ClinicalThought™ - Targeted therapies, including BTK inhibitors and combinations incorporating BCL-2 inhibitors, have replaced chemoimmunotherapy as the standard of care for treating CLL.
lankisterguy
Volunteer
in
CLL Support
1 year ago
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Doctor mentioned Richters???
I am on the Bruin trial and was randomized to Arm B which is Idelalisib and Rituximab ( 6 months of infusions ). My bloodwork so far has shown slight improvement since the start in January of this year. Now at my last blood work and appointment the doctor has noticed some lymph nodes increasing in size
I am on the Bruin trial and was randomized to Arm B which is Idelalisib and Rituximab ( 6 months of infusions ). My bloodwork so far has shown slight improvement since the start in January of this year. Now at my last blood work and appointment the doctor has noticed some lymph nodes increasing in size
rcusher
in
CLL Support
1 year ago
Venetoclax Consolidation Achieves Durable Off-Treatment Remissions in Patient with High Risk CLL Who Have Been on Ibrutinib More Than a Year
This is something that some of our USA members have discussed with their doctors and it looks like the logic is correct. [i]"Patients (pts) receiving ibrutinib (ibr) for CLL rarely achieve complete remission (CR) with undetectable minimal residual disease (U-MRD). Therefore, indefinite ibr maintenance
This is something that some of our USA members have discussed with their doctors and it looks like the logic is correct. [i]"Patients (pts) receiving ibrutinib (ibr) for CLL rarely achieve complete remission (CR) with undetectable minimal residual disease (U-MRD). Therefore, indefinite ibr maintenance
Jm954
Administrator
in
CLL Support
1 year ago
BTK Degrader Shows Potential for Treating Refractory CLL and SLL
A novel Bruton's tyrosine kinase (BTK) degrader, NX-2127, has shown potential for treating patients with double- and triple-refractory CLL or SLL who have experienced disease progression while on any covalent or non-covalent BTK inhibitor, as well as a BCL2 inhibitor. NX-2127 a BTK degrader has a novel
A novel Bruton's tyrosine kinase (BTK) degrader, NX-2127, has shown potential for treating patients with double- and triple-refractory CLL or SLL who have experienced disease progression while on any covalent or non-covalent BTK inhibitor, as well as a BCL2 inhibitor. NX-2127 a BTK degrader has a novel
Jm954
Administrator
in
CLL Support
1 year ago
Newswire Spring 2023 - my thoughts
I just finally got round to reading this and am left feeling more inspired and positive on the whole. There is still a long way to go and so much to learn about the baffling diseases of PMR and GCA but when I think back to when I was first diagnosed and struggling between 2012 and 2015, there are definite
I just finally got round to reading this and am left feeling more inspired and positive on the whole. There is still a long way to go and so much to learn about the baffling diseases of PMR and GCA but when I think back to when I was first diagnosed and struggling between 2012 and 2015, there are definite
tangocharlie
in
PMRGCAuk
1 year ago
JAK2V617F Allele Burden in Polycythemia Vera: Burden of Proof
Polycythemia vera (PV) is a hematopoietic stem cell (HSC) neoplasm defined by activating somatic mutations in the JAK2 gene and characterized clinically by overproduction of red blood cells, platelets, and neutrophils; significant burden of disease-specific symptoms; high rates of vascular events; and
Polycythemia vera (PV) is a hematopoietic stem cell (HSC) neoplasm defined by activating somatic mutations in the JAK2 gene and characterized clinically by overproduction of red blood cells, platelets, and neutrophils; significant burden of disease-specific symptoms; high rates of vascular events; and
Manouche
in
MPN Voice
1 year ago
CLL Webinar
Hi all Here is the link for today's CLL webinar. This educational webinar will give an overview of how CLL is treated today and the significance of ’hot topics’ and key treatment development advances published and discussed at 2022 international hematology conferences. What is new and what does this
Hi all Here is the link for today's CLL webinar. This educational webinar will give an overview of how CLL is treated today and the significance of ’hot topics’ and key treatment development advances published and discussed at 2022 international hematology conferences. What is new and what does this
Irishcll
in
CLL Support
1 year ago
LLS.ORG (USA) WHAT ARE YOUR TOP PRIORITIES FOR 2023?
Dear Advocate, Whether it’s making sure every patient can afford health insurance that works for them or advancing better treatments, LLS is committed to working tirelessly to advance policies that serve the needs of blood cancer patients and their families. In 2023 we will continue to work closely
Dear Advocate, Whether it’s making sure every patient can afford health insurance that works for them or advancing better treatments, LLS is committed to working tirelessly to advance policies that serve the needs of blood cancer patients and their families. In 2023 we will continue to work closely
lankisterguy
Volunteer
in
CLL Support
1 year ago
Diagnosis: "Favors Essential Thrombocythemia"
So this is good news. Except for one thing. My bmb did show some "mild to moderate reticulin fibrosis. Nevertheless the diagnosis favors the ET. My hematologist says that we will keep a close eye on bloodwork going forward. As I have the Calr 1 mutation and am already on Eliquis, no additional medication
So this is good news. Except for one thing. My bmb did show some "mild to moderate reticulin fibrosis. Nevertheless the diagnosis favors the ET. My hematologist says that we will keep a close eye on bloodwork going forward. As I have the Calr 1 mutation and am already on Eliquis, no additional medication
Mtnlife
in
MPN Voice
1 year ago
Drug interactions/conflicts
Hi everyone I am Coeliac and also have Essential Thrombocythemia for which I take Hydroxycarbamide. Amongst the many side effects from HC my regular blood tests have shown me to be borderline anaemic and my regular GP has monitored this for years - checking kidney & liver function, and also on Folate
Hi everyone I am Coeliac and also have Essential Thrombocythemia for which I take Hydroxycarbamide. Amongst the many side effects from HC my regular blood tests have shown me to be borderline anaemic and my regular GP has monitored this for years - checking kidney & liver function, and also on Folate
quanglewangle
in
MPN Voice
1 year ago
What is the difference between these two tests?
Parietal Cell Antibody, ELISA/ positive Parietal Cell Antibody with Relex to Titer/ Negative
Parietal Cell Antibody, ELISA/ positive Parietal Cell Antibody with Relex to Titer/ Negative
Tigerlilly81
in
Pernicious Anaemia Society
1 year ago
Why do we have mutations?
Why do we all have these bone marrow mutations? It cannot all be due to family DNA bad luck. My haemo told me that he is certain that my mutation is due to exposure to Benzene in petroleum products. In effect I have been poisoned by products which were supposed to be safe. Benzene compounds are still
Why do we all have these bone marrow mutations? It cannot all be due to family DNA bad luck. My haemo told me that he is certain that my mutation is due to exposure to Benzene in petroleum products. In effect I have been poisoned by products which were supposed to be safe. Benzene compounds are still
Andrew8
in
MPN Voice
1 year ago
Bone Marrow Transplant
BONE MARROW TRANSPLANT:Why Mazi Henry Uroegbulam Eric Otulle Eke Sr Will Never Ever Forgive World-famous Hospital For Failing His Daughter - was the child used as a guinea-pig? BONE MARROW TRANSPLANT: Sub-Continent with world's highest prevalence of SCD/SCT goes into BMT - a whole new era for medical
BONE MARROW TRANSPLANT:Why Mazi Henry Uroegbulam Eric Otulle Eke Sr Will Never Ever Forgive World-famous Hospital For Failing His Daughter - was the child used as a guinea-pig? BONE MARROW TRANSPLANT: Sub-Continent with world's highest prevalence of SCD/SCT goes into BMT - a whole new era for medical
sicklecellnews
in
Sickle Cell Society
1 year ago
Tapering with new issues ongoing
Tapering while new issues arvine profile image arvine• 8 hours ago•1 Reply well I have told my story pretty well all along, including some family serious illnesses . In previous comments, I have mentioned my son, who has fought a battle actually since June 2017, beingdiagnosed with multiple myeloma
Tapering while new issues arvine profile image arvine• 8 hours ago•1 Reply well I have told my story pretty well all along, including some family serious illnesses . In previous comments, I have mentioned my son, who has fought a battle actually since June 2017, beingdiagnosed with multiple myeloma
arvine
in
PMRGCAuk
1 year ago
Hot flashes?
Am having ever more hot flashes and sweating around my neck over last several months. Could it be the steroids? In the distant past, was relying on welbutrin for depression but got hot flashes and changed to escatolepram. In the last few years I started taking a small dose of welbutrin in addition
Am having ever more hot flashes and sweating around my neck over last several months. Could it be the steroids? In the distant past, was relying on welbutrin for depression but got hot flashes and changed to escatolepram. In the last few years I started taking a small dose of welbutrin in addition
Merryfield
in
PMRGCAuk
1 year ago
Tapering while new issues
well I have told my story pretty well all along, including some family serious illnesses . In previous comments, I have mentioned my son, who has fought a battle actually since June 2017, beingdiagnosed with multiple myeloma, having stem cell transplant in Jan 2018, as a mom, this was very hard to see
well I have told my story pretty well all along, including some family serious illnesses . In previous comments, I have mentioned my son, who has fought a battle actually since June 2017, beingdiagnosed with multiple myeloma, having stem cell transplant in Jan 2018, as a mom, this was very hard to see
arvine
in
Pain Concern
1 year ago
Can you 'demand' Tocilizumab for GCA?
I was diagnosed with PMR in January 23, responded well to steroids (15mg) but quickly developed GCA symptoms (severe headache pain, blurred vision and jaw claudication) when these were reduced to 12.5mg after 3 weeks and 'normal' CRP/ESR tests. I was referred to Ambulatory care but an ultrasound showed
I was diagnosed with PMR in January 23, responded well to steroids (15mg) but quickly developed GCA symptoms (severe headache pain, blurred vision and jaw claudication) when these were reduced to 12.5mg after 3 weeks and 'normal' CRP/ESR tests. I was referred to Ambulatory care but an ultrasound showed
tweety_pie
in
PMRGCAuk
1 year ago
Tocilizumab
Hi. Has anyone had Tocilizumab injections for pmr? I've been looking at recent research which seems to suggest favourable outcomes for pmr sufferers who have problems tapering prednisolone.
Hi. Has anyone had Tocilizumab injections for pmr? I've been looking at recent research which seems to suggest favourable outcomes for pmr sufferers who have problems tapering prednisolone.
BlueMozart
in
PMRGCAuk
1 year ago
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